Amnesia over 10 years of my life lost

[MIKEJ]

I was wondering if anyone has had major memory loss after seizures. Approx. 14 months ago I suffered a set of 5 tonic clonic seizures that left me unconscious for 5 days. Afterwards I suffered major memory loss, I couldn't remember where I worked or jobs I have had In the past 5 years, anyone I met through my kids school like teachers were strangers, I owned a boat for 3 years that I had sold that I barely remembered and so on. Some memory has returned over the last year but not much. I was wondering if anyone else has suffered similar problems. After tonic clonic seizures I have always had memory problems but not to this degree. The other thing after a seizure is I recognize everyone I look at but don't know someone I would have met a week ago. My wife is supportive but other family is not really I get comments like well now you can have new memories or we all forget things as we get old. I'm not sure what I'm asking but I find myself very isolated and don't want to burden my wife too much.

I just find it frustrating that people don't even want to try to understand or believe the postical phase, it seems they are afraid to want to try. It's easier and more comfortable to try to make me believe i'm exaggerating or lying.

 

[N Sperlo]

Wow, MikeJ. That is terrible. I can't imagine how painful that could be.

I do remember losing about a week of memory when I was younger. I know, not much. It was before we knew about my epilepsy, so I just found it odd. Looking back, it makes sense.

I hope you can find some answers here. I think you will. Welcome to CWE.

 

[masterjen]

Hi, and welcome!
Like Sperlo, I lost a week once around 4 years ago. That was unnerving enough; I can't imagine losing months let alone years. Memories of that week sort of returned a long time later, as a few brief "snapshots" but with no cohesivenss.

 

[MIKEJ]

Thats exactly what the memories are Its like someone showing you a photo of something that happened at that time there are no feelings or emotions attached to the memory.

 

[arnie]

I haven't ever lost one big chunk of time like you were describing, but there are many events, both very recent and from years ago, that have vanished. I've been diagnosed and on meds for just over 30 years now, and the losses are from both before and after the seizures. The only way I know that they are gone, of course, is if someone talks about a certain event and I realize I have no memory of it or connection to it at all. It just isn't there and nothing I do can brings it back. I guess it's not too bad, though, since I'm mostly unaware of the things that are lost, and you don't miss what you don't know is gone. Also, I have enough memories remaining from most of my life that I don't have the feeling that there are any huge gaps. One other aspect of my epilepsy is that I will frequently have random incidents from my past suddenly pop into my head in full detail. They are not usually anything unpleasant, just day-to-day events. That gives me an interesting connection to my past and sometimes those "flashbacks" will lead to other memories.

As for dealing with other people, I have had to find ways to compensate. My wife and family are used to me not remembering things, but it can be difficult in my business (I own a bicycle shop) when someone comes in and asks about their bike and I have no recollection of ever having seen them or what I did to their bike. At times they will have been in only a few hours before. I mostly just make a comment that I have a lousy memory and then move on to something else. I also have moderate face-blindness, (prosopagnosia) which means I don't recognize people too well, to put it mildly. I have learned to be friendly to everyone who treats me as if we should know each other so they don't think I'm being rude. If they stop to talk I have to sort of fish around until I get a clue as to where I might know them from. After I have seen people enough I will recognize them, fortunately. Face-blindness can make it hard to develop friendships, and most of the "friends" I have are people who work at our local stores, since I see them a lot at their place of work. If I see them in another context I may or may not recognize them, though.

All the best to you. You are not alone with your memory issues!

Onward!

 

[Dline]

Hi MikeJ

If this helps, I barely remember this past year and have chunks of time in the past that I don't remember. I was diagnosed last May, on Keppra at high doses (not good for me!!!), and still was having 5 complex partial seizures a week. The memory loss is frustrating--it feels like my brain is totally fried and sometimes it's like I'm living in the movie Groundhog Day .

My hubby gets it though. Thankfully he has an awesome memory, so he helps me through. Although, sometimes we still argue about something he told me that I don't remember...the phrase "Yes, I did tell you this" was big in my house before I was diagnosed!

As for my family--I kept bombarding them with email links to articles that described the effects of E. until they started to get it Thankfully, my friends understand that unanswered phone calls and texts aren't anything personal, it's just that forget...hang in there--you have a bunch of people here who at least understand what you're going through!

 

[kirsten]

I lose patches of memory but never as long as five years. I barely remember this year. It's hard to believe it's half way through already. I've run into embarrassing situations with people I didn't know I knew. But my friends and family have come to understand that I will occasionally lose memories, so most of the time we can either laugh about it or sincerely work through what it is that I lost. There are certainly times when I need (or just want) someone to walk me through something that happened and make me understand why I did what and all the details that make things make sense. I'm definitely lucky that I have people who are willing to do that with me.

But you say you were unconscious for days? What was it? Status? Something else? What ever it was, it was surely more than simply some tonic clonics?

 

[valeriedl]

I had my very first seizure about 11 years ago when I was 26. The seizures wouldn't stop so I had to be put into a coma. I can't remember how long I was in the coma for, a few weeks I think.

When I came out of it I'd lost about 10 years of memory. I had no clue who the guy was that I was dating at the time was. I had to ask my parents who the guy was that would give me a kiss and tell me he loved me when he came to see me in the hospital.

I really don't remember anything about the job I was working at the time. I was the receptionist at a very big company. There are a few people I remember there. They were the ones that we made fun of because of the stupid things they did but I can't tell you what their job was. I had worked a few other jobs before I had my seizure but can't tell you much about them.

Much of the last few years of high school are gone. I don't remember graduating. I went to California and Mexico when I was in high school for an athletics event and I can't tell you a single thing about it. I don't remember going to collage at all. I went on many trips with my friends that I don't remember a thing about. My friends like to joke with me telling about the 'things' that I did when we went on the trips.

When I first started having seizures after every one I'd loose hours to days of memory. It's like that now but not quite as bad because my seizures aren't as bad. If I do have a very bad seizure then I will loose a good bit of memory. A few months ago my husband and I went to see a movie. I had a bad seizure a few days after the movie. A commercial came on tv for the movie that we'd seen and I told my husband that it looked like a good movie to see. He told me we went to see it already and that we'd gone out to eat before it. I don't remember doing any of that.

It seems though if I really liked something or if it was funny then I do remember a good bit of it. I had a job that I absolutely loved. I can remember things that I did there and the people I worked with. I always say that I could probably go back to that job and after about a week I'd know what I was doing again.

Right now after about 4 months things start to fade away. It took me about 3 years to remember president Regan had died. Every time something would come on tv about him and they said he'd died I'd always ask my husband when he had died. He told me and that we'd even watched his funeral on tv. When I kept doing it over and over my husband thought I was joking until he realized that it just wouldn't stick in my head that Regan had died. My husband get's mad because I forget almost everything but I won't forget about the time he told me he thought he saw a UFO.

My family will get frustrated because I ask them the same questions over and over again. They always say "I just told you about this a few days ago" but I don't remember the answer.

I know exactly what you are going through.

 

[pinkfloyd]

Mikej, valeried - Sorry to hear about the struggles with memory loss. Mine has been very short rounds of half hour after TC. Stuff I do from fear of memory loss:
- write down important stuff (financial, family, dates). For me, writing seems to reinforce memory faster than hearing
- use note tools e.g. evernote for urgent or not so important things
- memory game with myself: e.g. try to associate 3-5 words with a name (e.g. related, funny, pnemonic, alliteration)

Interesting experiences on memory loss: check radiolab dot org slash story /91569-memory-and-forgetting/
Read a few books on sleep research, where good sleep helps improve memory retention.
However I have not found any which explains memory loss or recovery..

 

[valeriedl]

I've got post-its and papers with important things all over my house. I keep a weekly calendar in my purse so I can keep track of things that happened or are going to happen, I sort of keep it like a journal. We've got a calendar in the kitchen with important dates of everything on it. This does help a lot.

I can't remember (imagine that) exactly how my neuro put it but it had to do with where the damage to my brain is and that's why I have memory problems.

 

[Belinda5000]

Hello Mike,
I lost a lot of my childhood because of my seizures.There are a lot of things in my adult life I don't remember because of my seizures.I don't know how much I lost because of my seizures.I was on a drug that wiped my memory clean for 36 years.
my husband also has epilepsy but hasn't had a sz since hince his surgery in 1972.
my husband is my rock.

 

[tiggy'smom]

Hi Mike, Linda, I had my first seizure at 34 an then off and on till 43, fingers crossed 1 year free. Combined meds and seizures, my short term memory and some long term memory is pretty shitty. My short term had got so bad I would be wathcing t.v. and during a commercial channel surf and forget where I started. My neurologist then suggested that I get a game system and the games that come with it that have puzzles such as brain teasers, riddles, and any other games that challenge you to kind of "keep your brain on it's toes" (his words not mine). Two of the best are Brain Age 1&2 for the Ninetendo DS. It tests your brains age chronologically vs how well it works. Mine started out at 77 and at the end of the month 24, so it works. You can try that computer game Luminosity, I've heard that works well. Good luck and welcome!

 

[C0urt]

i lost about 10 some years total,
i lost about five years, and i couldnt form new memories for the longest time.
the makes I was a photographer and a blogger for a long time helped out a lot

 

[qtowngirl]

welcome mike
and hugs. have had/am having memory issues but nothing in that category, can't imagine what you go through. tbh tho i am noticing worse changes the longer my surg recovery goes on, can only hope it hits a ceiling (soon!) and is copable.

with the amount of members we have, guaranteed there's people in your exact shoes, like valerie. good place to call home

 

[Cint]

Hi Mike,

I've had epilepsy for over 30 years and my memory has gone down hill. After I had a left temporal lobectomy back in 1990, I lost a huge chunk of memory of that decade. I call it "the lost decade". At the time, I had two kids in elementary school so they were still growing. And now when I look back at pictures from them at school functions, or birthday parties, holidays, etc. so much of it I don't remember. I just want to cry every time I see those pictures. I often forget names, and words. Things need to be organized in my home so I will remember where to find everything. My ex couldn't understand, so I had to leave. My neuro sent me to a neuropsychologist for strategy on learning new memory skills. Here are some informative links on epilepsy and memory function:

http://www.epilepsy.com/learn/impact/thinking-and-memory/memory-and-seizures

http://www.epilepsy.com/learn/impact/thinking-and-memory/diagnosing-and-treating-memory-problems

http://www.epilepsy.com/learn/impact/thinking-and-memory/memory-techniques

 

[Cint]

I can't remember (imagine that) exactly how my neuro put it but it had to do with where the damage to my brain is and that's why I have memory problems.

My damaged area is deep in my hippocampus, on the left side. That is where memories are formed. And mine is too deep in my brain to retrieve.

 

[MIKEJ]

Thank you for the information its nice to find some people going through the same thing as I. My wife is great support but no one truly can understand what its like. I have the same feelings my kids are now in grades 8 and 10 and Ive lost like you the same precious memories and has led to depression and a great deal of anger. j I know exactly what its like to have people come up to me and start talking and I have no idea who they are.


Out of curiosity what are some of the ways that you have tried to explain to people what its like to have epilepsy and the problems along with it.

 

[bighealey]

I lost months of my memory with my seizures. My co-workers and wife are being patient. My wife simply says, "that's ok if you don't remember" which helps me because I get pretty upset with myself over this. I cannot remember names and projects I have done. I remember some things and forget others. Something really weird as I seem to be more dexterous with my left hand than before. Some one here mentioned the word for not being able to remember a word, but I don't remember.

 

[valeriedl]

My wife is great support but no one truly can understand what its like.

A good bit of times my husband or family will say "You already told me that" or "I told you that earlier" - "Don't you remember?"

No I don't! I can't help it that I'm asking or telling you things 10 times, I don't even remember telling it to you the first time.

 

[tiggy'smom]

Hey Mike, Linda. It all depends on the person. My Mom who was my best ally and understood all I was going through passed away May 25th after a long battle with cancer. My Dad, who is hard of hearing and asks you to repeat everything and then gets pissed when you raise your voice thinks I'm drunk when I have my memory lapses. I have always used humor to get by and sometimes try and get others to question their own sanity. But all joking aside, just be honest. I mean think about it, if you had blackouts from drinking people would think you were cool, if you had a drug problem, you'd get a second chance. It's just f'd up how people think, that's why I make others question themselves. So when they say you already said that, just keep saying what?, and act like you are on the ball and they are the one's that missed the boat, that gives you the chance to catch up. I know it sounds crazy, but it actually works, call it stall tactics.